ACMCRN ♿

Arachnoiditis & Chronic Meningitis Collaborative Research Network
(a Canadian non profit corporation)
#arachnoiditis #chronicmeningitis
#AdhesiveArachnoiditis

[ACMCRN ♿ @acmcrn]

Did you know what @acmcrn is most grateful for today? It's also what we are bringing #arachwarriors for Thanksgiving. What better way than to show thanks to everyone who made this paper possible!
Don't miss! https://t.co/kB03Yda7qY
#RareDisease
#Arachnoiditis #research

[ACMCRN ♿ @acmcrn]

@ArachnoiditisI @AngelineStacy @eurordArachnoiditiss @AChVoice @HeathHowardNH @StefanKertesz
Be the first to read the #acmcrn study results preprint form, as we wait in hope for Peer review acceptance in PLOS1.
Largest #Arachnoiditis study to date. #rare

https://t.co/kB03YdaFgw

[ACMCRN ♿ @acmcrn]

@CheckOrphan
#Arachnoiditis is a #raredisease that has little research, no cure and no approved treatments.

Using the Rare Disease Collaborative Research Network model, we recently submitted our PRO study, with 1106 participants.

Pre print available: https://t.co/kB03Yda7qY

[ACMCRN ♿ @acmcrn]

@eurordis Congratulations!

[ACMCRN ♿ @acmcrn]

@AChVoice I love this! Who do I credit if I share amongst my #Arachnoiditis peers.

[ACMCRN ♿ @acmcrn]

@AChVoice

[David Smith @DavidESmitty]

The DEA has been repeatedly been made aware that these production cuts cause medication shortages, and harms and deaths to patients. The FDA and DEA have a Memorandum of Understanding to coordinate data so that shortages do not occur, but that is not happening. The DEA has continued with these cuts every year for several years anyway, and obviously have no intention of stopping. This places the Is in violation of the UN Single Convention on Narcotic Drugs. This may place the DEA and FDA officials in the position of having liability for the harms and deaths caused to patients, through one of the federal laws that states that taking an action, or enacting a rule or regulation that causes harm when the agency was aware that the harm would be caused yet proceeded anyway, means that they are PERSONALLY LIABLE. We will be pursuing this in the future. @DEAHQ @US_FDA

[Tommy. T @tallmetommy]

The wild part is this.
Neurons are not the “main character” of consciousness. They are just the sparks.

The real story is the ecosystem.
Astrocytes tuning the environment, microglia deciding peace or war, oligodendrocytes shaping signal speed, all running a quiet election every second about who you get to be.

When that network falls into harmony you get clarity, memory, stability.
When it slips into inflammation you get fog, fatigue, anxiety, and chaos.

The brain is not thinking.
It is negotiating.
It is a living parliament of cells trying to reach coherence.

And the way we live, breathe, eat, sleep, and handle stress is literally casting votes in that cellular democracy.

This is the real frontier.
Mind is not a neuron.
Mind is an orchestra learning to stay in tune.

[ACMCRN ♿ @acmcrn]

@westr Stealing this to share across our socials, ok? #Arachnoiditis #raredisease #undiagnosed @acmcrn
https://t.co/tGwkS3YLOZ

[ACMCRN ♿ @acmcrn]

Thank you, Dr. West!

[Robert West, PhD ✝️ 🟦 🧬⚕️#PM101 @westr]

NB: MedRxiv Preprint from @acmcrn and @StuffThatWorks:
#Arachnoiditis- Leveraging crowdsourcing and #AI in a cross-sectional study of 1,105 cases to improve identification, understanding, and treatment
https://t.co/8KcfOna809
Thank you to Lori Verton and the other authors for this extra-special gift to Arachnoiditis victims during this holiday season! 🙏🏼🙏🏼🙏🏼🙏🏼

[ACMCRN ♿ @acmcrn]

@kelizrm @CMerandi Sorry to hear that you are another in our #arachwarrior club. Come join our community! https://t.co/tGwkS3YLOZ
Our preprint of the largest study ever done so far in #Arachnoiditis came out today!
https://t.co/kB03Yda7qY

[ACMCRN ♿ @acmcrn]

@CMerandi We have the data to support your theory. In pre print:
https://t.co/kB03Yda7qY

[ACMCRN ♿ @acmcrn]

@westr @StuffThatWORKS Thank you!

[ACMCRN ♿ @acmcrn]

@HeathHowardNH @SenatorShaheen Amen! Universal Healthcare would benefit so many hard working people who have had their careers and lives stolen by #Disability and #pain brought on by #Arachnoiditis. It's caused by spinal trauma, very often by the medical system via botched surgeries, interventional techniques

[ACMCRN ♿ @acmcrn]

@doubleusn @HeathHowardNH @TrackAIPAC @SenatorShaheen Sorry to hear you are struggling too!
If you believe that you may have Arachnoiditis, you are invited to join our international community of #arachwarriors . #ACMCRN, Arachnoiditis & Chronic Meningitis Collaborative Research Network https://t.co/tGwkS3YLOZ
[email protected]

[ACMCRN ♿ @acmcrn]

@HeathHowardNH @SenatorShaheen Congratulations and good luck!
Please contact our Arachnoiditis based non-profit Arachnoiditis and Chronic Meningitis Collaborative Research Network (ACMCRN) . We are an international non-profit focusing on Arachnoiditis Research, Education, and Peer Support. Let's work together!

[ACMCRN ♿ @acmcrn]

@missmayim
I am enjoying your videos and presenters. I've taken a sabbatical from my non-profit rare disease work to study non western healing techniques. Lifelong religious, myth, scientific study.
Please check out Metarationalism by Morgue. ISBN 9798327418554

[ACMCRN ♿ @acmcrn]

@ShawnUSThug @LeadingReport What are people thinking

[ACMCRN ♿ @acmcrn]

@LeadingReport Dangerous

[ACMCRN ♿ @acmcrn]

@NRO Disaffected Republicans? What do we need to offer them